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Healing Ashyr

  • Phoenix

      10 May 2025
    Posted by: Kathryn Maffey
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    It took a little while for the scorched earth of the summer to be safe for a bonfire. But we got there in the end! Since arriving home we have also been slowly re-earthing, and tonight Ashyr finally got to let off his bonfire with his best friends around him. It was a special moment for him to reconnect with those who fill his cup, and the spiritual significance of finally burning that bonfire was not lost on us. May he rise from the ashes our sweet boy as we continue to pray for a long remission. I look back at this chaos and can't believe how it all worked out. The generosity of you all made this possible. Ashyr is walking, talking, swallowing, smiling and bright as a button. Scans have shown no necrosis and there have been no signs so far of any collateral damage from the proton therapy. Thank you from the bottom of our hearts for allowing Ashyr this best chance not just of surviving but thriving. I think the givalittle page has a natural end date and I'm not sure what that is. But I just wanted one last post update and expression of gratitude to all of you 🙏 🥹. The journey continues but we have been given the best foundation from which to fight from. Mauri tū Mauri Ora 💚💙🩵

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    • 12/05/2025 by Katharina

      It's so great! Best luck

  • Laser beams update

      16 January 2025
    Posted by: Kathryn Maffey
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    We arrived safely in Florida and Ashy has started Proton Therapy (laser beams). We are 6 treatments down and 24 to go. He has been amazing at tolerating the treatment, avoiding needing a GA each day which is amazing. He has been inspiring facing fears and focusing on ways to have fun each day. "I think the purpose of life is to have fun" - one of his actual pearls 🥰.

    There are other kids here from Aussie with very similar stories regarding difficult access to funding (i.e. due to slow processes and red tape not due to need), requiring them to have to self-fund/community fund this treatment aswell. They point out that the budget is there and accounted for and that this all should technically be funded by our collective taxes. They are being vocal about this issue and we will rally behind them too, as we believe every kid with brain cancer deserves access to this treatment. Not just those who can front up the cost or that have the support we have had from friends and family to help. We will also be petitioning for a proton machine to be built in Australia in collaboration with New Zealand to offer a streamlined service for Kiwi's and Pacific Islanders. It is false economy to not have this option considering the long term effects of our current treatment options.

    As hard as this road has and will be, we hope Ashyr's suffering will not be for nothing and that some good can come from this journey for other kids.

    Aroha nui to you all. We feel your love and support each day. 💚

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  • Merry Christmas!

      24 December 2024
    Posted by: Kathryn Maffey
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    You are all amazing 🥹 thank you so much everyone who has donated 🙏. I can't believe we have got to this stage and what a huge impact the donations will have for Ashy. We are packed and ready to go... 3 suitcases of medical supplies, a million travel forms and ton of paperwork later!

    💫 Praying Ashyr is having a good day tomorrow and is super well to travel 💫. He had a great day today including an orbie gun fight, a Christmas movie and even remembered to set up some food for Santa and his Reindeer.

    We will be flying backwards in time so will be having x2 Christmas mornings this year! One at home and one in the plane.

    Wishing a Merry Christmas to all our secret 🎅 Santa's ❤️💚🤍.

    Xx

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  • Ticket's for Florida!

      14 December 2024
    Posted by: Kathryn Maffey
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    Firstly we are absolutely overwhelmed by the support and donations 💚💙🩵. Such generosity I can't even believe it and makes me very teary. I never would have set this up so thank you Terri for making me you stubborn woman!

    You all deserve to hear an update! About mid-way through last week we had an amazing email from the team at UF Health saying they would accept self-funding (although we meet criteria for highcost funding the process is too slow so it was not pursued) and will be able to offer Proton Therapy within our tight timeline! Even better, their planning process is super quick, just 1 week, so we would not need to leave until Christmas day giving us time at home to get Ashyr back on his feet before the flight as well as Christmas morning at home! It was the best news ever! We are just awaiting a comparison plan from Starship as our final confirmation. But in lieu of this we have had to start planning including buying tickets to get there! The funds raised were enough to be able to cover those tickets for our whole little whanau to go and be with Ashyr during this difficult time. We have a way to go. Treatment is very expensive, creeping towards $300,000 and loss of wages for 3 months or so will add to this, so thank you again for your generous offerings! It all means so so so much 🥹🙏

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